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A M E R I C A N B R A I N T U M O R A S S O C I AT I O N
Steroids
ACKNOWLEDGEMENTS
ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATIONFounded in 1973, the American Brain Tumor
Association (ABTA) was the first national nonprofit
organization dedicated solely to brain tumor research.
For over 40 years, the Chicago-based ABTA has been
providing comprehensive resources that support the
complex needs of brain tumor patients and caregivers,
as well as the critical funding of research in the pursuit
of breakthroughs in brain tumor diagnosis, treatment
and care.
To learn more about the ABTA, visit www.abta.org.
We gratefully acknowledge Jeffrey Raizer, MD, director
of Medical Neuro-Oncology at Northwestern Memorial
Hospital, and assistant professor of Neurology at
Northwestern University/Feinberg School of Medicine
and Margaret Schwartz, advanced practice nurse,
Brain Tumor Institute at Northwestern Medical Faculty
Foundation, for their review of this edition of this
publication.
This publication is not intended as a substitute for professional medical advice and does not provide advice on treatments or conditions for individual patients. All health and treatment decisions must be made in consultation with your physician(s), utilizing your specific medical information. Inclusion in this publication is not a recommendation of any product, treatment, physician or hospital.
Printing of this publication is made possible through an unrestricted
educational grant from Genentech, a Member of the Roche Group.
COPYRIGHT 2014 ABTA
REPRODUCTION WITHOUT PRIOR WRITTEN PERMISSION
IS PROHIBITED
3www.abta.org
AMERICAN BRAIN TUMOR ASSOCIATION
Steroids
INTRODUCTION Steroids are naturally occurring substances. In brain
tumor treatment, steroids are used to reduce the
brain swelling, or cerebral edema, sometimes caused
by the tumor or its treatment. The steroids given to
brain tumor patients are corticosteroids hormones
produced by the adrenal glands. They are not the
same as the anabolic steroids used by athletes to build
muscle.
Dexamethasone (Decadron) and prednisone are
corticosteroid drugs. These steroids can temporarily
improve neurological symptoms. Because steroids
are hormones, their long-term use requires close
monitoring. This publication will review why steroids
are given, potential side effects, how to manage the
effects of steroids and a few guidelines for their safe use.
ABOUT CEREBRAL EDEMA Cerebral edema is the accumulation of fluids in the
tissue around a brain tumor. It is a common occurrence
in people who have a brain tumor. Edema happens
when the small blood vessels around the brain leak and
fluid collects in the surrounding tissue. Edema can also
occur following surgery or treatment for a brain tumor,
particularly radiation therapy.
AMERICAN BRAIN TUMOR ASSOCIATION4
When edema leads to increased pressure on the brain,
it can cause headaches, drowsiness, difficulty walking
or increased weakness. Sometimes the edema actually
causes more symptoms than the tumor itself.
WHEN ARE STEROIDS GIVEN? Steroids may be prescribed when a brain mass is
diagnosed, around the time of surgery or radiation, or
with chemotherapy. Steroids are used for short-term
symptom control although they may occasionally be
continued for a period of weeks or months.
Steroids are also used for other reasons. Steroids
can improve appetite, prevent nausea and vomiting
from chemotherapy, reduce pain and prevent allergic
reaction to some cancer treatments.
DO STEROIDS TREAT TUMOR CELLS? In the case of most brain tumors, steroids are not
prescribed to kill cancer cells. One exception is
lymphoma involving the brain or spinal cord (primary
central nervous system lymphoma or PCNSL). If this
type of tumor is suspected, steroids are not usually
used until after the diagnosis is confirmed by biopsy.
Please note that even in lymphoma steroids are not a
long-term cure for this tumor.
HOW ARE STEROIDS TAKEN? Steroids are usually administered by intravenous (IV)
line or by mouth (orally). It may take 2448 hours
before you begin to see the effects of the medication,
but the change is often remarkable.
To protect your stomach, take your steroids with food
or milk. Your doctor may also prescribe a medication to
further protect your stomach.
As with all medicines, the goal is to use lowest, most
effective dose of medication. This may mean the dose
STEROIDS
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is adjusted up or down to find the best dose for you. You
and your family can be helpful by keeping your doctor
aware of the way you react to the steroids.
When your doctor feels you no longer require steroids,
you will be given instructions for slowly stopping the
drug. Do not abruptly stop taking your steroids. A
gradual reduction of steroid dose allows your body to
begin producing its own steroids again. This gradual
tapering avoids a problem known as adrenal crisis.
Lowering steroid levels too quickly can also cause a
rebound increase in swelling.
SIDE EFFECTS Steroids can cause a wide range of unwanted effects. The
most common side effects include increased appetite,
weight gain, increased blood sugar levels (especially if
you have diabetes), gastrointestinal problems, frequent
urination, insomnia and mood changes, muscle
weakness, susceptibility to infections, pneumonia,
thinning of the skin, and acne. Steroids can interact with
other medications, either increasing or lowering their
levels in your blood, which can alter their effectiveness.
Other, more serious side-effects can occur, although they
are less common.
The benefits of steroid use almost always outweigh
their potential side effects. If you have any questions
about balancing risks and benefits, please talk with
your doctor.
MANAGING COMMON SIDE EFFECTS
WEIGHT GAIN AND INCREASED BLOOD SUGAR LEVELS Steroids increase the appetite and often cause weight gain.
They can also cause the redistribution of fat in an unusual
pattern puffy cheeks or a small hump at the top of your
back. Fat is redistributed more on the abdomen and less in
the extremities. Stretch marks are also common.
6 AMERICAN BRAIN TUMOR ASSOCIATION
Steroidscausegradualweightgain.Ifyougainmore
than three to five pounds in one week, please call
your doctor. A sudden, large weight increase can
signal medical problems that should be reported to
your health care team.
Askyourdoctorforareferraltoalicensedregistered
dietician experienced in treating cancer patients. A
healthy eating plan may slow weight gain and provide
the nutrients important to your healing.
Exercisecanminimizeweightgaincausedby
steroids.
Steroids may affect your blood sugar level, especially
if you are diabetic. Some patients need medications
to help control elevated blood sugars. If you are
experiencing increased thirst and urination, contact
your physician as this is a sign of elevated blood sugar
levels.
Lastly, its important for you to stay adequately
hydrated. Keep your kidneys and bowels in good shape
by drinking six to eight glasses of non-caffeinated
liquid per day.
GASTROINTESTINAL PROBLEMS Steroids can cause stomach irritation or bleeding in
the bowels.
Takeyourmedicationwithfood,milkoranantacid
that your doctor prescribes for you.
Callyourdoctorifyouhaveabdominalpain,runa
temperature, are constipated or notice any blood in
your bowel movement.
Avoidtheuseofnon-steroidalanti-inflammatory
drugs (Advil/ Motrin/ibuprofen or Aleve/
naproxen) and aspirin unless directed by your doctor.
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INSOMNIA AND MOOD CHANGESSleep disturbances are a very common side effect.
Askyourdoctorifyourdosagecanbeadjustedsoyou
take more medication in the morning and less after
dinner. (Dont make this change on your own.)
Healthfulsleepinghabitsmaybeofhelp.Theseinclude
avoiding bright light in the evening hours, avoiding
caffeine in the afternoon and evening, establishing a
regular nighttime routine, and observing a consistent
bedtime.
Medicationmaybeprescribedtohelpyousleep.
Steroids are also known to cause changes in mood,
including depression, mood swings, irritability or (rarely)
psychosis.
Letyourdoctorknowhowyouarefeeling.Medications
may relieve some of these symptoms and can be
particularly helpful if you are required to be on steroids
for a long period of time.
Itisalsohelpfultodiscusstheseeffectswithyour
family so they know what to expect and can be
supportive.
MUSCLE WEAKNESS Steroids sometimes cause weakness in the muscles of the
legs, arms, neck and chest. The most common symptom
of muscle wasting from steroids is difficulty getting up
from a chair or toilet or difficulty climbing the stairs.
If the chest muscles are affected, you may experience
difficulty taking deep breaths.
Exerciseisimportanttokeepyourmusclesasstrongas
possible.
Askyourdoctoraboutexercisesthatmayhelp
strengthen your muscles, or for a referral for physical
therapy.
Letyourphysicianknowaboutanymuscleorjointpain
you experience.
AMERICAN BRAIN TUMOR ASSOCIATION8
INFECTIONS Steroids can impair your bodys ability to fight
infections and can mask the beginning of an infection
in your body.
Bealerttoanythingthatjustdoesntseemright,
especially if you develop a fever, chills or body aches.
An increase in temperature may be the first or only
sign something is amiss.
Lookatyourtongueandinsideyourmoutheach
time you brush your teeth people on steroids are
especially prone to yeast infections, or thrush, in
their mouth. If you notice a thick white coating on
your tongue or white spots on the roof of your mouth
and back of your throat, make your nurse or doctor
aware.
Somepeoplearepronetodevelopingacertaintype
of pneumonia after they have been on steroids for a
prolonged period. Your doctor may choose to start an
antibiotic for this reason.
Askyourphysicianifyoushouldreceivethe
influenza, shingles or pneumonia vaccines.
Becarefultofollowthehealthprecautionsusedby
people at higher risk for infection. Wash all fresh
fruits and vegetables carefully. Wash your hands
frequently. Cook meat and poultry until well done.
Use gardening gloves when working outside. Avoid
large crowds.
CALL YOUR DOCTOR IF ... Youdevelopafever(temperaturehigherthan
100.0F), even if you feel well otherwise.
Youseeanybloodinyourbowelmovements.
Youhavestomachpain.
Yougainmorethanthreetofivepoundsinoneweek.
Youdeveloparashorsoresinthemouth.
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Youaredrinkingandurinatingalot.
Youarefalling.
Chest pains or difficulty breathing may signal a medical
emergency. Call for emergency help.
As with all medications, keep steroids out of the reach of
children.
THE ABTA IS HERE FOR YOUYou dont have to go through this journey alone. The
American Brain Tumor Association is here to help.
Visit us at www.abta.org to find additional brochures,
read about research and treatment updates, connect with
a support community, join a local event and more.
We can help you better understand brain tumors,
treatment options, and support resources. Our team of
licensed health care professionals are available via email
at [email protected] or via our toll-free CareLine at
800-886-ABTA (2282).
AMERICAN BRAIN TUMOR ASSOCIATION10
NOTES/QUESTIONS
AMERICAN BRAIN TUMOR ASSOCIATION PUBLICATIONS AND SERVICES
CARE & SUPPORTCareLine: 800-886-ABTA (2282)
Email: [email protected]
PUBLICATIONSAbout Brain Tumors: A Primer for Patients and Caregivers*
Tumor Types:
Ependymoma
Glioblastoma and Malignant Astrocytoma*
Medulloblastoma*
Meningioma*
Metastatic Brain Tumors*
Oligodendroglioma and Oligoastrocytoma*
Pituitary Tumors*
Treatments:
Chemotherapy*
Clinical Trials
Conventional Radiation Therapy*
Proton Therapy
Stereotactic Radiosurgery
Steroids*
Surgery*
*These publications also available for download in Spanish.
CLINICAL TRIALSTrialConnect: www.abtatrialconnect.org or 877-769-4833
More brain tumor resources and information
are available at www.abta.org.
A M E R I C A N B R A I N T U M O R A S S O C I AT I O N
For more information contact:
CareLine: 800-886-ABTA (2282)
Email: [email protected]
Website: www.abta.org
To find out how you can get
more involved locally, contact
[email protected] or call
800-886-1281.
8550 W. Bryn Mawr Avenue, Suite 550
Chicago, IL 60631
AD0414